MRI, anyone?

iVillage Member
Registered: 04-05-2003
MRI, anyone?
11
Mon, 04-10-2006 - 8:20am

Both of my boys are on the spectrum... 8 1/2 with Asperger's and 6 1/2 with HFA. In all of the assessments, evaluations, specialist visits, etc. that we have done over the years for both of them, no one has ever recommended doing an MRI. Recently we saw a top-notch geneticist at Mount Sinai (in NYC) and she expressed just about shock that we had not done this for the boys. A very close friend of mine is a pediatrician and has begun to become quite educated about ASD, and she has recently been telling me that an MRI is a standard part of the autism work-up.
I think we are going to take the boys to get it done, even though the odds are their results will be "normal"... I'm wondering how many of you have done the MRI on your kids and if you have anything to say about it.
Thanks!

Traci

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iVillage Member
Registered: 09-12-2004
In reply to: jakdanmom
Mon, 04-10-2006 - 8:39am

We have not. It was not even mentioned by the pediatrician, psychiatrist, and psychologist. The center for autism and asperger's didn't mention it either. I think they all base dx on behavior and observation.

Are you afraid your boys might be upset by the process?

Kelly

iVillage Member
Registered: 03-31-2003
In reply to: jakdanmom
Mon, 04-10-2006 - 9:11am

The dev ped who diagnosed Sylvia (age 4) recommended that we get an MRI, but we declined. The reason he wanted the MRI is that Sylvia was born with a hemangioma -- a kind of birthmark -- on her nose. This particular kind of birthmark tends to swell -- it's basically a cluster of blood vessels. Anyway, he thought that perhaps she also had a hemangioma in her brain, which perhaps affected the development of certain areas in her brain, thus causing the autistic symptoms. All very interesting, but when I asked him what could be gained from the MRI, he said, "Well, it wouldn't affect her prognosis or her treatment. Basically we'd just be able to say, this is why she has PDD-NOS." DH and I decided that the MRI would be far too drastic a procedure for Sylvia -- she'd have to be under general anaesthesia -- given that we really wouldn't gain any usable information from it.

We were kind of under the impression that the MRI would give the doctor information for some research project he was doing. Now, I have nothing against that -- obviously, the research has to be done! But we didn't want to traumatize our daughter, and we decided ultimately that we had to look after her well-being first. Given that we can't change the "why," we'd prefer to focus on what we can do now -- treatment, therapies, etc.

That was just our decision, though, given the age of our daughter etc. I think you have to decide what's best for you and your kids. Ask the doctor, though, what he's hoping to learn from the MRI, since that might influence your decision...

Jennifer

iVillage Member
Registered: 04-05-2003
In reply to: jakdanmom
Mon, 04-10-2006 - 9:48am

Jennifer and Kelly,

Thanks for your replies... my hesitation in doing the MRIs has been that it's a rather invasive procedure and low-yield in terms of answers. My friend's husband is a neurosurgeon (but we would not use him since his specialty has nothing to do with us) and he has told us that even though we are most likely not going to find out anything from doing it, the benefit is that it rules out many conditions that could present with autistic-like symptoms.

Traci

iVillage Member
Registered: 02-20-2001
In reply to: jakdanmom
Mon, 04-10-2006 - 9:49am
A pediatric Neurologist is who gave my son his diagnosis and he had us do a EEG and an MRI along with some genetic bloodwork.

 


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iVillage Member
Registered: 03-26-2003
In reply to: jakdanmom
Mon, 04-10-2006 - 11:07am

Nope, never an MRI. Mentioned once for some reason but I don't remember why or why it was decided not to do. I think it was part of testing Cait for seizures with the EEG.

Both ASD kids were diagnosed by neurologists. Some of the tops in the autism field originally. Cait was diagnosed at the LADDERS program (Margaret Baumans program) near Boston and that was where PDD was first brought up as a possibility for Mike though more testing was needed and we moved shortly there after. Then they were both upgraded to AS by a neuro in our area who is known to specialize in ASD as one of her specialty areas.

I don't know why. Maybe because they were originally diagnosed a fair number of years ago and it wasn't common then.

Renee

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iVillage Member
Registered: 03-26-2003
In reply to: jakdanmom
Mon, 04-10-2006 - 2:40pm

Tina....was the genetics tests (bloodwork) looking for fragile x? Our neuro mentioned we may want to look into it later....just curious.

As for the MRI....never mentioned....not even by neuro.

Christie

iVillage Member
Registered: 02-20-2001
In reply to: jakdanmom
Mon, 04-10-2006 - 6:24pm
Yes it was fragile X and it was like 6 vials of blood...we never would have been able to do it if he was awake.

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iVillage Member
Registered: 01-29-2004
In reply to: jakdanmom
Mon, 04-10-2006 - 6:32pm
DS 5 had an MRI earlier this year. He was having rages and they wanted to trule out a mass that could be the cause since it was a radical behavior change. He was sedated and from the time we got to the hospital until they released him was about 3 hours. Insurance picked most of it up- I think out of the $6000 we paid 10%. Our neuropsych wanted to rule out any possible medical reason for behavior before dx-ing anything on the spectrum. We are still waiting for EEG results before a dx.... DS also saw a geneticist for chromosomal analysis...Also insurance picked this up 100%. She expected these things to be normal but better safe than sorry...Heather
Avatar for stephsmom98
iVillage Member
Registered: 03-28-2003
In reply to: jakdanmom
Mon, 04-10-2006 - 9:48pm

My daughter Stephanie (age 7 1/2) had an MRI at age 5, but she was having seizures that came on her constantly and she would freeze up in a fetal position and other things. So the MRI was to rule out a brain tumor. She was dx with epilepsy. She had another one done because of her complaining about pain in her vaginal area. Both times she was sedated. One with a needle and the second time with a nose spray to knock her out. First time there was no dx of Aspergers or ADHD yet, but neurologist suspected she had ADHD and recommended a pyschologist and psychiatrist for her but didn't look for anything related to that of the brain. She was mainly looking at seizure activity. She also had loads of EEGs. But neurologist never mentioned about MRI for anything related to Aspergers and ADD.
I don't know if that was any help or not.

Debbie

Debbie, Mom to my "only" Stephanie
iVillage Member
Registered: 04-05-2003
In reply to: jakdanmom
Tue, 04-11-2006 - 1:45pm

Heather,

So, your MRI was normal and you're still awaiting EEG results? Good luck on everything and I hope you post when you get some answers...

Traci

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